Tag Archives: health

I haven’t blogged properly for a while, partly because I’m wrapped up in The Mighty Healer, and partly because the boyfriend and I have both been varying shades of ill, ill, ill, for several months. Nothing sucks up time like hospital visits and bedrest.

Here in the UK, the general election is about to topple onto our heads. That means blanket coverage of men in bad suits shouting at each other about the NHS, not because they care that it’s circling the drain, but because winning debates is more fun than losing them. After a while, all the chatter ceases to sound like real life and enters Pink Floyd video territory, particularly when Cameron gets a bit sweaty and you sit there hoping his rubber mask will slither off to reveal the circuitry within.

So I want to share something fun.

Karolyn Gehrig is a queer disabled artist from Los Angeles. Like me, she has a connective tissue disorder and spends a lot of time traipsing in and out of hospital. To pick herself up, Karolyn started taking selfies in a medical setting, tagging them #HospitalGlam.

They’re gorgeous.

“I started posting #hospitalglam because it was frustrating to me that every time I got sicker I’d disappear from my commitments and then feel shy about explaining where I’d been when I knew there was absolutely nothing wrong with pursuing treatment for my disabling chronic illnesses.”

The idea struck a chord. With the success of the #HospitalGlam hashtag on Twitter, Karolyn set up a Tumblr for fellow patients to submit their own selfies, giving them something to do in those doldrum waiting rooms, and winning back a bit of self-esteem at the same time. Any gender, any illness, artistic or silly, made-up or fed up.

“There are few places where one feels less empowered and beautiful than in a medical setting, and it’s not just because of that awful beige color the walls in doctor’s offices are always painted. Most humans are fortunate to only associate doctors with tedious time spent in waiting rooms and an annual check up. For those of us who are chronically ill, however, the experience of spending as much time as we do in medical settings becomes a spin-cycle of misery, depression, and – often – questioning our own sanity. […] Being disabled in an able-bodied society quickly became a source of shame and frustration.”

Being chronically ill isn’t as glamorous as the brochure made it out to be. The invisibility Karolyn talked about – self-inflicted or otherwise – has an accumulative effect on the psyche. That’s on top of the media’s relentless commodification of the body, where presentability is bound up in youth, health, and unattainable conventional beauty. That’s why it’s so important to see images of people with chronic illnesses and disabilities where a) they’re in control, and b) pity porn, or the godawful ‘inspiration’, doesn’t come into it.

Model Melanie Gaydos will be familiar from Rammstein and Die Antwoord videos. Here, she talks about growing up with Ectodermal Dysplasia and bringing her individuality to the modelling world.

“When I go on a photo shoot, if there’s other industry models there, they normally don’t really know what to make of me. And they’re usually like, ‘What the fuck is this?’ […] I love modelling. A time for me to be completely open. I guess it’s kind of like a therapeutic process for me.”

#HospitalGlam is a weapon for those of us with chronic illnesses. With it, we reassert our individuality, regain our playfulness, and have a ‘frivolous’ place to escape to when all else might seem out of control. It is therapeutic. And it’s fun. And all the while people ask what the fuck, we know it’s needed.

Today is Rare Disease Day, an international day of awareness-raising activities under the slogan “Join Together for Better Care”. Yesterday, the House of Commons held a debate on the effects of welfare cuts on the sick and disabled. As you can see, it was teeming with people who care.

While the debate dribbled on, I read a discussion on one of the Marfan Syndrome social forums. A man was expecting the birth of his son, and wanted to know how he could bring the boy up to see Marfans in a positive – or at least neutral – light. A Marf parent has a 50% chance of passing the mutated gene onto their child. If his son isn’t born with the syndrome, he will still experience the fallout of strangers’ reactions to his father. Which, let me tell you from experience, will not be the stuff gleaming Liberal utopian dreams are made on.

This had me thinking. If I could go back in time to offer my child-self advice on living with disability, what would I say?

Anyone with a rare disease or disorder will be well-acquainted with the word ‘awkward’. It usually arrives wearing a friendly mask: mild teasing when you explain you can’t help your colleague move their heavy desk, or the tutting of your fellow Girl Guides when you faint on the way to the world’s oldest toy shop and have to lie panting on the Oxford Circus floor tiles, watching commuters’ feet hurrying by.

Disability is just as much a social challenge as it is physical. You learn you are not simply inconveniencing people – you are the inconvenience.

I grew up before the Internet was permanently glued to the palms of our hands. When I eventually got a modem and an hour each weekend to play on it, it didn’t occur to me to look for advocacy groups, support services, or other people like me. My fear was that I would type ‘Marfans’ into the search field and find nothing but derision and cluelessness, as I had in real life. “If it was really that bad,” my PE teacher said when I tried to explain that trampoline + weak connective tissue = disaster, “I would have heard of it”. Then she made me get on the damn trampoline.

It took me years to gather the courage to seek out other Marfs online. When I did, I realised how valuable support groups are for those of us with rare disorders, and not merely in a fluffy, join-hands-and-sway-to-the-folk-guitar way.

“If you ever get a fuzzy black curtain descending over one side of your vision, drop what you’re doing and run to A&E – your retinas are detaching “ Good to know, yes? Or: “Get a medical alert bracelet. If you’re on the floor with a collapsed lung, you won’t be able to talk.”

Nobody had told me. I was so used to explaining the little I knew about my condition to my own doctors, to being the star attraction for medical students, to fielding gigantic questions from people in power such as the DWP employee who asked, “So, can you just, like, explain to me what this thing is?“. I had been trained to believe that even if quietly soldiering on put me in danger, at least it meant I wasn’t getting in anyone’s way.

The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. – Scope.

Napoleon is a hardworking taxpayer and has no time for your nonsense.

Able-bodied or otherwise, we are brought up knowing the archetypes: The Inspiring Cripple, The Grateful Invalid. Strivers and Skivers. The poisonous leftovers of the Victorian Deserving/Undeserving dichotomy. I have said before that to discuss these issues one has to cloak oneself in charm and detachment, because if there’s anything those in favour of welfare cuts can’t stand, it’s the bolshie sick. Perhaps it reminds them of the uncomfortable old adage that a society is only as civilised as its treatment of the vulnerable.

So, on Rare Disease Day, when I like to take stock of my network of support, and the possibilities of the future, I find myself looking at my country and not feeling terribly wanted. Nevertheless, I still have sufficient self-esteem to know that if I could go back and tell my child-self anything, it would be that disability does not equal inferiority. It doesn’t, despite the strenuous efforts of those more fortunate than you: people who may be elected officials, or wearing ATOS lanyards, or just little girls impatient to get to the toy shop before it closes.

There’s been a ripple through the Marfan community this week. Some American comedians I’ve vaguely heard of (my world is muffled by nineteenth century poet’s letters to their dentists) have taken it upon themselves to mention Marfan syndrome in their latest film, The Internship.

Instead of using their immense media power to spread lifesaving information to the suspected thousands of people who don’t know they have Marfans, Vince Vaughn and Will Ferrell decided it would be easier to throw this out there, apropos of nothing:

The National Marfan Foundation have released a statement urging the film’s producers to use this opportunity to spread the word about this often fatal disorder, and also pointing out the obvious: it was a stupid thing to say. Reactions from individual Marfs have ranged from “I’ve heard worse” to this, which reads like a punch in the gut:

A Virginia man, who lost his two-year-old son to Marfan syndrome in 2011, wrote that he was “extremely upset with the lack of taste, concern and respect concerning this disorder.”

The blogger Maya, also known as MarfMom, is, as always, joyful and positive, and has written about the film. She rightly thinks we ought to use this opportunity to educate, because the danger of the line is that it spreads misinformation. Half of people with Marfans don’t know they’ve got it. They go without medication, take part in dangerous activities, and may not find out until they’re in the back of an ambulance. Accurate information in the public eye is vital.

‘Big man’s disease’? Marfan syndrome affects men and women equally. ‘Giant killer’? Not all Marfs are exceptionally tall, and even so, they tend to be thin or unmuscular. In fact, if I had to pick a mythical creature to represent Marfans, it would be the willowy elves from Lord of The Rings. They’re long, they’re languid, and they’re sick to the back teeth of orcs crawling out of the woodwork. And what is this ableist obsession with fantasy monikers anyway? Giants, dwarves, monsters. Anything but human.

Elfking Thranduil thinks your attitude stinks.

Handy rule of thumb: If you don’t have a disability, don’t make jokes about it.

I’m going to have that printed on little glitzy flashcards to make it all the more memorable, because although it’s basic human decency, some people still struggle with it.

No.

All the Marfs I know make light of our health among ourselves, our friends, and families. Laughter is useful, particularly when – and this actually happened to me – a saleswoman earnestly informs you your incurable illness will clear up if you just drink enough aloe vera juice.

But if you don’t inhabit that sphere, you can’t assume what people’s thresholds are. You can’t assume what people are just about managing to cope with, what their history is, who they’ve lost.

Another thing Vaughn and Ferrell might be unaware of is that people with a long-term health conditions are strongly encouraged to keep their feelings to themselves. Classic derailing: “It’s only a joke, don’t take it so personally, no-one will take you seriously when you’re angry”. If you’re going to speak out about ableism you must cloak yourself in charm and detachment, as if this wasn’t your everyday life being discussed. Heaven forbid you become one of those frightening party-pooper militants who lurk in drains with Pennywise the clown.

Yes, it’s just a weak joke in a film unlikely to go down in cinematic history. But there will be kids who’ll suffer in school because of this. There will be adults who’ve lost a child or a parent or a friend who will have to smile politely at jokes like this from colleagues, strangers, and even friends who, because they’ve seen it in a mainstream film, think it’s harmless behaviour.

When I was fifteen, I had a summer work experience placement at Ipswich’s psychiatric hospital. St Clements was one of the old ‘asylum’ style hospitals with high-ceilinged wards, green grounds, and a big, romantic entrance hall like something from a smart Edwardian hotel.

Among the patients I got to know, there were two shuffling old men who always stuck together. They rarely said a word, even to each other, and spent their days in the potting sheds propagating seeds to sell in the hospital shop. Someone told me these two men had spent their whole lives in the hospital; that their mothers were sent there because they’d given birth out of wedlock. I was sceptical, not because I didn’t believe such awful things had happened, but because I thought that particular social shame was Victorian in origin.

However, one of the many surprising things I learned when we hightailed it to Highgate this week for a talk hosted by Sarah Wise, author of Inconvenient People: Lunacy, Liberty and the Mad-Doctors in Victorian England, is that the old story of the dissolute male knocking up the maid and having her put away in a mental hospital to avoid a scandal was in fact a twentieth century phenomenon. And, more surprisingly, Victorian men were more likely to be maliciously accused of insanity than women – because that’s where the money was.

Those who were eccentric, wayward, rebellious, different in some fashion or even just stood in the way (often of money), were often locked up at the behest of family members who stood to benefit. They were aided and abetted by a growing number of ‘mad doctors’ who readily certified ‘madness’. There was money in the lunacy trade — certainly more than in certifying people as sane…

I haven’t yet read the book, but the talk reminded me of when, in Venice this summer, we took the vaporetto out to San Servolo, the so-called ‘island of the mad’ to see the remains of the hospital there. Most of the building is now occupied by the University of Venice, but the pharmacy remains intact, along with a small museum and an imposing white chapel amongst the botanic gardens, radiating heat.

Like the subjects of Sarah Wise’s research, most of the inmates of San Servolo were not mentally ill at all, but dipsomaniacs (alcoholics) or suffering from malnutrition. Being cheap and plentiful, polenta was the dietary staple of the Venetian working classes, but too much of it can cause hallucinations and erratic behaviour. The doctors only realised this when patients who’d come in raving returned to the community – and thus their regular diet – only to be readmitted soon later with the same old symptoms.

In the museum, there was a long, long line of before-after shots of some of the nineteenth century patients, as if physical appearance can ever really tell us anything.

Having had depression for most of my adult life, there’s always a slightly guilty sense of “there but for the grace of…” when viewing the records of people in similar situations a hundred or so years ago. As Sarah Wise explained, those suspected or accused of mental illness in England were at the mercy of unqualified ‘mad doctors’ and The Commissioners of Lunacy (which sounds like a rubbish steampunk band), a system open to abuse, especially when the theory of monomania drifted across the continent.

Monomaniacs were defined as individuals who appeared fully sane except for one triggering factor, one preoccupation. Monomania was a worrying concept for the public, a) because it was a French theory and therefore probably cobblers, and b) because it made them confront the possibility that mad people looked and behaved just like everyone else.

Which, in my experience, sounds precisely like today’s attitudes.

But doesn’t everyone, healthy or otherwise, have a right to eccentricity? Particularly in England, or so the English tell themselves. And this cognitive dissonance led to some astonishing, uplifting cases of the public turning out in droves to support the accused, even going as far as staging daring rescues. In response to the incarcertion of Lady Lytton — a bona fide case of a disgruntled husband using his influence to silence an intelligent wife — The Somerset Gazette printed in 1858:

Rouse, and assert Old England’s boast With indignation rife; From Orkney to The Scilly Isles Cry ‘Liberty in Life’!

I can’t wait to get stuck into the book. Thank you, Sarah, for an eye-opening talk.

While reaching this article, I was saddened to discover that St Clements, with its vast grounds and grand halls, was turned into a middle class golf resort in 2011. I wonder what happened to those two old men who knew nothing but the asylum.